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Thirdly... Guilt. Bah! It does seem to go with Fibro like peas go with small chunks of mushy carrots.

But why?

Forget about the pain of Fibro for a moment. Strip away a bunch of the other symptoms that are common as well, such as: Fibro Fog, fatigue, skin sensitivity, sensory sensitivity, and all other secondary conditions. (In my case, Costochondritis and IBS.)

Once you peel away the layers, you're left with depression, mood swings, lack of ambition and energy, and bouts of bawling. It's quite an emotional ride. Then if you add back in everything else that we suffer... OVERLOAD!!

The problem with Fibro is the inability to fathom it. The condition is a total loss of sensory control. We laugh, we cry, we hurt, we're confused, we want to be coddled and told everything will be okay but we don't want to be cuddled or touched in the wrong places. We want people to understand...but we don't want them to say they can understand how we feel. LOL Seems a bit hypocritical, but it is what it is.

As a FibroMate we all usually have several things wrong with us every second of every day. We stand there talking to our friends or family like a normal person while in the background there's a touch of panic going on. "I'm feeling pains in my chest...I don't remember if these pains are like the usual pains I get with Fibro. Is this something new?" Meanwhile we miss half the conversation going on around us or worse, to us. People start to make assumptions about our behavior. They believe us to be self-centered and sometimes we are but only because our pain and suffering makes us think about ourselves all the time! I don't want to think about my pain but.. OW!

Also...

We want to relate to others. "Do you ever feel a stabbing pain in your earlobe," you ask someone. And their response? A strange look and a shrug. "Umm, not really, no."

"Oh," you say lamely, and chalk it up to your Fibro. Sometimes verbally...sometimes met with an eyeroll.

You know, I'm constantly trying to tell Dan what I'm going through even though I know he's probably tired of hearing it because it is important to me that someone out there, without Fibro, believes me when I talk constantly about the different types of pains and emotions and symptoms I have any given day.

I don't sleep very much, I cry at night a lot during stressful times, I wake up with chest pains or a bad knee or any number of aches and pains. Most often, I wake up with a throbbing in the back of my head that tells me I have a 50/50 chance of developing a debilitating, drug-resistant, migraine. And all of this makes me crabby a few times a day before I get hold of myself.

I want someone to recognize all I feel and the constant fight I go through just to get up in the morning, clean, work, take care of my child, exercise, and keep a smile on my face and positive outlook on life. I need someone to pat me on the back and say...good fight today trooper...and not someone who shares my way of life. I want someone who doesn't commiserate with me to say it!

But they don't.

Instead, I get what most FibroMates get, and that is slight recognition as long as I'm feeling good that day.

On the days that I'm feeling 98% pain free and mostly energetic, I'm rewarded with more smiles and more understanding then on the days when I'm at 10% and needing support the most. On those days I become Gin-the-invalid or Gin-the-drama-queen. Not verbally (though many Fibro friends of mine go through some verbal brutality) but with looks and actions.

Sometimes, Dan will sigh at me and turn his head in the same way he does with my daughter when he's lost patience or doesn't believe her. I read into that...

And THAT brings in the guilt.

I feel guilty when I lose a day to Fibro pain. I feel guilty because I try to tell myself that my lack of energy and ambition is in my head and I need to fight it, I need to push harder and not give up.

Then... I feel guilt from outside sources. A look from Dan, a disinterested grunt from my mother. Are these amplified by my self guilt? Conceived by it? Quite possibly, but it is there.

Fibromyalgia is behind the wheel or our emotions. It makes us irrational at times. We feel guilt and then we get mad for feeling it. We tell ourselves that we shouldn't have to feel guilty and our friends and family shouldn't MAKE US feel guilty.

And that brings us to defensiveness.

"If I could make him understand how it feels he would never look at me like that again. He'd never question me when I said I couldn't do something or needed him to get the child off to school. If only I could...make him understand."

One thing I have to remember is how hard it is for ME to comprehend what I'm going through. How can I expect someone outside to make sense of it? But, as I stated earlier, Fibro doesn't make us rational. We want understanding and support and when we don't get it, we fight for it.

What Non-Fibro Mates have to remember is this. Fibro Sufferers are still mostly jeered and accused of making up stories, drawing attention to ourselves, over-embellishing so we can have excuses to be lazy...and this isn't just common people saying this...they're learning it from Doctors! (If all doctors agreed and came out publicly admitting that Fibro exists, the general public would follow suit.)

Due to recent studies, the stigma is slowly... and I mean very slowly...fading. But not fast enough. Still more research is needed to convince many doctors that Fibro isn't a mental disorder. With all of the mental symptoms, it is quite common for Fibro Mates to be treated as "depressed individuals working themselves into feeling pain".

Ugh! Back to frustration. We have to fight just to be believed. "Please.. I feel pain. I need help. I need an explanation...a plan of attack! Give me something!"

But often we don't get anything. We're experimented on. We can't be understood. Can't be sympathized with. Only a few doctors in the world are fighting to understand Fibromyalgia instead of grouping it with other chronic pain diseases and wishing us luck. (And as a side note: In our struggle for just...someone to understand and help, we're the perfect targets for shysters and their BS cure-alls.)

Yes...all sorts of emotions run high with Fibro Patients from depression to guilt to defensiveness to bitterness. We feel it all, and depending on who you ask, we feel it all tenfold.

So there might be times when we feel guilt when no one is guilting us, defensive when no one is accusing us. These feelings are just another perk of Fibro but like all other symptoms...once we can learn to recognize them we can better handle on them.

Let people scoff at us, roll their eyes, disbelieve. We know how we feel and as long as we know we're fighting the good fight every day and not giving up...the rest of the world can bite it! ::grins::

Those are my thoughts...scattered as they are. LOL

As always my friends, I hope you have 98% pain free days that keep your head up and your heart firm in the belief that the future looks bright.

Saturday, October 24, 2009

Probably one of the most frustrating things about my doctor's office is the multiple doctor effect. My choice of doctor has had two other doctors in her practice. One left, to be replaced by another. Now...my original doctor (Doc C) used to get very busy some days and her staff would schedule me for the other doctor. (Doc Z) Now Doc C and Doc Z used to have like minds for Fibro. "Tell me what you want to try." Not a perfect solution of course, but better than doctors who try to tell a Fibro patient what to try based on commercials.

When Doc Z left the practice to be replaced by Doc L, I was once again shifted to Doc L to build his client base and my "need an appointment the day I call" needs. So I met Doc L. A nice enough fellow who looked at my chart with confusion and of course I had to explain why I wasn't on Anti-depressants for Fibro. "I react badly. They call it chemical sensitivity. I don't tolerate many medicines at all. I can barely take half a vicodin for pain without itching myself to sores."

He nodded as if he had been listening but he just started asking me more questions: "Have you tried..."

The nodding game commenced and for the ones that I didn't nod to, I would ask "What type of medicine is that?"

"Oh it's a.... (anti-depressant, anti-seizural, muscle relaxer...etc.)" All of which we had just discussed my horrible reactions to.

Not to sound like an ungrateful wretch but...there seems to be a serious lack of communication. If I mention that I've had suicidal tendencies or apathy on anti-depressants and antiepileptics...that is NOT okay with me and I don't want to try any more of them. (I think six is my limit.) I can't speak for how these medications work for other conditions/diseases. But I am definitely NOT going to treat my Fibro symptoms of pain, exhaustion, and depression with a medication that "may enhance" these symptoms in addition to making me gain 40-60 pounds!!! So I'll be obese, apathetic, still tired/lazy, but I'll experience on average 15% less pain?

I'll take the pain and choose LIFE! (Disclaimer: Not all people react to anti-depressants/antiepileptic this way. No hate mail please. lol)

I've gone on Anti-Anti-Depressant rants before and many of my readers have vehemently disagreed. But let me point out a few tidbits that I don't believe I've publicized previously. (Although I might have. Thank you Fibro Fog. LOL)

-I was on anti-depressants before, so I'm not sitting from the sidelines talking about something I've never tried or experienced for a decent length of time. (I tried my first anti-depressant in 1999.)

-I had two moments of suicidal urges. Urges are different than the "what is it all for" depression. Urges are like random hiccups in depression switching you from general melancholy to instant despair. And the worse part is, that "instant despair" reacts like a light bulb. Bink! Suddenly you just know you have to kill yourself and you have the idea on how best to execute it. As reflexive as a rubber hammer to the knee, you're up and moving to fulfill the urge.

Obviously, I didn't succeed. Some people do succeed sadly, and others...survive the attempt often with scars, liver, kidney issues afterwards.

To be fair, only one of these episodes occurred when I was actively taking an anti-depressant. The other was after I had been "off" medication though I'm sorry to report that I don't have the exact amount of time I had been off drugs. So I'm going to say that it had been around six months in attempt to be fair.

The Urge while I was off medication lasted about a thirty seconds. The thought came to me. I sat back in my office chair and blinked dumbly, staring at my cork board. ("I want to stab myself.") I knew I could do it. The moment passed though and I was left wondering what the hell that feeling was all about.

The Urge while I was on medication lasted for over twelve hours followed by ten days of panic and horrible fear that it would return...the likes of which still haunts me! People ask me how long ago that happened. About 3-4 years ago. With my 1.5 year old daughter in the next room. My husband had a gun in the house, in the closet. Four steps from my bed. In four steps, I would have been dead. My phone was right beside me. I had the thought of calling Dan and telling him what I was going to do. That thought is all that saved me. ("Hi. I know where your gun is, and I'm going to use it.")

I can't remember if I handcuffed myself to the bedpost or just imagined I did. I remember thinking the cuffs were there and riding every second until someone could come and watch me. My daughter remained in her crib...I think. 2 hours later my MIL came and took care of the baby. She didn't look in on me. My husband showed up an hour later and came into the bedroom to find me clinging to the bed rail.

Which brings me to my next point.

-The impulse to kill oneself increases on medication. (That is NOT to say that NOT being on anti-depressants is any better. I refuse to call anyone who claims that A-Ds work for them a liar.) In my experience, discussions, interviews, and support loops I've noticed a trend. Those who have tried to commit suicide before being on A-Ds have a better chance of them working without the suicidal Urges.

-Finding a goal, and a reason to live is your BEST anti-depressant. Obviously, if this were an easy thing to do, A-Ds would be out of business. But if you're anything like me and you can't or won't try any more anti-depressants, this becomes your best defense. Talking yourself out of panic/anxiety by recognizing your symptoms, repeating why you have them and reminding yourself the feeling will pass is all some of us have.

Makes me wonder if those on A-Ds are doing the same thing...in pill form. They feel anxious or panicky...they take a pill and feel better in a few moments. Or...did they just convince themselves of it? (IMPORTANT WARNING: DO NOT DISCONTINUE ANTI-DEPRESSANTS. The medication reacts badly to this, and you can do more harm than good. Weaning is the best way, if you're considering going off your medication. and please, talk with your doctor if you are unsatisfied. I am not promoting a mass exodus here.)

Knowing how I react (as well as other FibroMates...since we're prone to chemical sensitivity) should put you in my frame of mind at the time of my doctor visit.

When Doc L asks me to try another daily pill, swearing it isn't an anti-depressant...I still get the sweats. I've reacted poorly to everything including pain meds, migraine meds, anti-histamines, and muscle relaxers.

So I told Doc L that I want to either try medical cannabis (to which he actually gave a short chuckle) or Low Dose Naltrexone. To which I was told... "I don't see what Naltrexone would help". I gave him the Stanford doctors name and asked him to do the research but I'm willing to be he didn't. Doctors have their own lives of course, and I'm not sure I should expect a doctor who doesn't specialize in Fibromyalgia to care to research it. ....and then I thought about it. If a doctor is going to put me on meds for a condition...he/she better damned well care to research it or pass me off to someone who IS willing.

My doctor may feel the best course of action is anti-depressants or antieplieptic medication but when I say no...no means no and any doctor of mine better be ready to hand me off like a hot potato or willing to try some of the more kooky approaches because if I have another 10 day migraine where I'm told "there's nothing we can do for you" only to get a shot of Demerol that makes me sick... I just might go thug.

Luckily, Doc L did give me a prescript for Physical Therapy. I'm excited by that. Exercise is good for Fibro, but motivation is hard. Having someone to push you and work with you makes exercise easier. And it is no different than "Normals" working out at a gym so don't let the term "physical therapy" bring negativity to the process.

I think that is enough anti anti-depressant and doctor speak for today.

Remember, my friends. Be in constant control of what goes in your body. Be firm but diplomatic. We're the only ones who know how Fibro feels.

Saturday, October 3, 2009

I waited for a while before posting about LDN because I didn't feel comfortable saying anything until I knew that the success rate for this drug was over 20%. (Which in a lot of studies is surprisingly rare for the medication some of us are taking in reference to effectiveness for Fibromyalgia treatment.)

Treatment vs. Pain Relieving.

Treating the symptoms of a condition is much different than taking a pain med and masking the symptoms. If you take a pain pill hides the pain your body is feeling. A treatment attacks and tries to fix a little deeper than that, going after the cause of the condition.

I wanted to clarify since I'm often told that "pain meds work the best for me". Yes, me too. And most of that is because of my inability to tolerate most drugs. Anti-seizure, anti-depressants, muscle relaxers...all of them make me feel funky, give me brain starts at night and one nearly made me commit suicide. No thanks!

So, I'm screwed right?

Perhaps not. Low Dose Naltrexone did really well with its Stanford pilot study.

Fibromyalgia symptoms are reduced by low-dose naltrexone: a pilot study.

Younger J, Mackey S. Pain Med. 2009 May-Jun; 10 (4): 663-72

OBJECTIVE: Fibromyalgia is a chronic pain disorder that is characterized by diffuse musculoskeletal pain and sensitivity to mechanical stimulation. In this pilot clinical trial, we tested the effectiveness of low-dose naltrexone in treating the symptoms of fibromyalgia.

PATIENTS: Ten women meeting criteria for fibromyalgia and not taking an opioid medication.

INTERVENTIONS: Naltrexone, in addition to antagonizing opioid receptors on neurons, also inhibits microglia activity in the central nervous system. At low doses (4.5 mg), naltrexone may inhibit the activity of microglia and reverse central and peripheral inflammation.

RESULTS: Low-dose naltrexone reduced fibromyalgia symptoms in the entire cohort, with a greater than 30% reduction of symptoms over placebo. In addition, laboratory visits showed that mechanical and heat pain thresholds were improved by the drug. Side effects (including insomnia and vivid dreams) were rare, and described as minor and transient. Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to low-dose naltrexone.

CONCLUSIONS: We conclude that low-dose naltrexone may be an effective, highly tolerable, and inexpensive treatment for fibromyalgia.PubMedID: 19453963

It isn't a miracle drug but it is proven helpful and considering all the flops of medications I've dealt with in the past and all of the side effects?

I'll be trying this if my Fibromyalgia worsens.

My friends, my readers, my Fibro Mates, I would love to hear your stories if and when you try this medication. Good and bad because in truth this study is a "pilot study". I've been told there is a bigger study that is ongoing but I'm not sure when the results will be posted. I tried to wait but most of the emails I get these days asking things that I haven't already covered, is about LDN. So I caved under the pressure. LOL

So...until I hear anything bad, I'm going to endorse Low Dose Naltrexone based on this pilot study which was NOT ENDORSED OR FUNDED by pharmaceutical companies. Even better!

Thursday, October 1, 2009

You didn't mention whether or not you wished to be anon, so I'm going to stick with just your first initial.

I would suggest that you first start keeping a journal. Jot down in a notebook as soon as you can when you first get up, how you slept, any nighttime incidents (dreams, nightmares, restless leg syndrome, Princess and the Pea syndrome, etc.) Then I want you to document your pain throughout the day. Morning, noon, evening, night. Also, write down what you're eating in detail and how your digesting it. (Are you getting gas when you eat certain foods? Stomach cramps?)

Not all Fibro sufferers have IBS (Irritable Bowel Syndrome) but I've heard a few FibroMates claim to notice flare-ups after eating something. Food allergies seem to be common with Fibro patients.

After you get your journal going, start taking some vitamins and supplements. I've compiled a good list with the aid of a few herbal remedy books. (This blogs March of 09 archive has a 3 part vitamin/herbal supplement series that can help you decide what to take based on your personal symptoms) It doesn't hurt to take doctor endorsed vitamins as well as a few herbs to see if you can keep yourself off the "big guns" (aka anti-depressants/anti-seizure/narcotic medicines HOWEVER, do not ignore your symptoms. If you need chemical meds, take them!)

Once you have vitamins pumping through your body keeping you balanced, it is time to insert some exercises which is probably one of the hardest things to do. Start slow and small. Nothing wrong with down 3 minutes a day and building up to 30 after a few years.

Those are good places to start in your treatment.

A couple of things I wanted to make mention that you can expect from your Fibro experience:

- You will fail sometimes, and that is okay.- You have to constantly push past the negativity and find a goal for your life now. Gain focus and you will get through this.- You will have days where you feel perfectly fine...and you will have days that you can't get out of bed. With hard work, you'll have more of the former than you will the latter and that is the greatest accomplishment.- "You got to know when to hold 'em...know when to fold 'em." Use the journal to find a pattern or a reason for a flare up or just a reason for pain that day. Remember that FibroMates have delayed reactions to some serious pains. You might pull your arm funny while getting heavy luggage out of the overhead bin on an airplane and feel the muscle ache 3-4 days later.- You will swing like a monkey from a tree in regards to moods. Everyone is different but we're all over-sensitive people. We hurt...a lot. Being cranky is to be expected. Make note of it, and try to keep yourself from clubbing those you love most with your bad attitudes. I personally, cry a lot. Which is sad when I think about how I used to pride myself in being a non-crier. lol- You will be tested for everything under the sun, AND you should seek testing for everything under the sun, sometimes regularly. Fibro gives us all kinds of fictitious pain, so we have to be careful nothing serious slips beneath the radar or is attributed to Fibro.- You will learn to survive this... It may take you a while but you will learn.

Some things you feel now, you won't even know to attribute to Fibro, so I suggest you go back to the April 09 archives and check out "The List". It's a mammoth list of Fibro symptoms that could help you determine more about yourself and the severity of your condition.

Oh and...try not to sign up for too many support groups if you can help it. Most FibroMates just want to help but as a new patient I would suggest doing a ton of research, get to what there is to know about Fibro from doctors and Fibro veterans before you start talking to the general public.

As much as I love my groups, I have to admit than when I was first struggling with understanding Fibro, I was thrown off course by well-meaning, but entirely misinformed, Fibro sufferers. (One woman in a grocery store tried to convince me that Fibro is an auto-immune disease. She claimed to have suffered most her life and to be an expert.) Just be very careful... Fibro makes it hard to love life and be positive enough without listening to a lot of misery and anger. In moderation it is good to be supportive for those having a bad day BUT too much will drive you nuts and keep you down.

I hope all of this gives you a good starting point, J. Feel free to email me with additional questions.

Fibro Helper Gin

To clarify, I am not a doctor or nurse or nutritionist. I'm not selling any products or taking any donations. I simply have Fibro and a lot of knowledge gleaned by lots of research. Fibromyalgia is supposedly going to be with me until the day I die, so that is how long I will fight it.

The only rules of Fibro Fight Club are: No one will talk down to others and no one will rant about how much their life sucks. There are plenty of places to have self-pity moments (and we all get them!) but not here.